Persistent post-concussion syndrome occurs when concussion symptoms persist over a year after injury. Fewer than 1% of people who suffer a concussion will have symptoms that persist over a year and fewer than 0.1% of people who suffer a concussion will have symptoms that persist over two years. Unfortunately, I am in the 0.1%. I have had concussion symptoms since my first concussion that I suffered in late 2009. Since then I have had over 25 known concussive events but it is estimated I've had hundreds of subconcussive hits to the head during my soccer career. Symptoms I live with are headaches and migraines, dizziness, nausea and vomiting, memory issues, difficulty concentrating, vision issues, light and noise sensitivity, tremors, fatigue, and so much more.
Post-Traumatic Migraine
Post-traumatic migraine is usually a persistent migraine and is not responsive to migraine treatments. It results from metabolic crisis in the brain which is why most medicines are ineffective. Post-traumatic migraine is one of the hardest aspects and effects of concussion/TBI to treat and many times patients live with some sort of chronic migraine as a result.
Cranial Nerve Palsy
Cranial nerve palsy results from damage to the cranial nerves which causes weakness depending on which cranial nerve(s) is/are damaged. In my case, I have cranial nerve palsy in my third, fourth, and sixth cranial nerves. This results in the inability to move my eyes downward, drifting of my eye, nystagmus, ptosis (droopy eyelid), and the feeling of my eyes getting "stuck" when moving them. This has impacted my ability to read and has caused dyslexia-like symptoms.
Postural Orthostatic Tachycardia Syndrome (POTS)
Postural orthostatic tachycardia syndrome is a form of dysautonomia that causes high heart rate and low blood pressure upon position change, usually from sitting to standing. First line treatment for POTS is increased fluid intake and exercise, especially exercises to strengthen to calf muscles to help improve venous blood flow. Medications such as beta blockers and florinef are usually tried as a second line therapy. Last resort treatment is IV fluids. I was unable to tolerate beta blockers due to my low blood pressure. I am on florinef and I receive IV fluids. Due to my Crohn's I am unable to properly hydrate myself which is why fluids were ideal for me. I have previously been able to put my POTS into a three year remission with diet and exercise.
Autoimmune
Crohn's Disease
Crohn's is an autoimmune disease that can affect any region of the GI tract from mouth to anus. My disease started in my small intestine but has progressed to my colon and most recently, my stomach. My Crohn's has resulted in strictures which cause recurrent obstructions. I am on Remicade, a TNF-a inhibitor. I also take steroids to control inflammation. My disease had a very atypical presentation. It started with abdominal pain and repeated anaphylaxis episodes. My symptoms now include abdominal pain, nausea, vomiting, oral ulcers, arthritis, anaphylaxis, alternating diarrhea and constipation, malnutrition, weight loss, uveitis, blood in stool, fatigue, and more.
Behcet's Disease
Behcet's is both an autoimmune and autoinflammatory disease. Behcet's attacks blood vessels of any size, regardless is they are arterial or venous. I was diagnosed with Crohn's but further testing has shown that my Crohn's presentation is most likely a result of Behcet's. Symptoms I experience are GI issues, oral ulcers, skin ulcers, genital ulcers, Raynaud's, arthritis, uveitis, easy bruising, costochondritis, fatigue, and all other symptoms listed above for Crohn's. Remicade also treats Behcet's. My doctors and I are working on finding the right medication regimen to help ease my symptoms and possibly induce remission!
Sjogren's Syndrome
Sjogren's syndrome attacks glands and gland-like structures in the body. It causes dry eyes, dry mouth, dry nose, kidney issues, chronic cough, joint pain, fatigue, and more. I experience all these symptoms. Sjogren's can be either primary or secondary. I have secondary Sjogren's and was diagnosed off symptom presentation, bloodwork, and a lip biopsy. We are hoping that the Remicade and steroids will help my Sjogren's symptoms. I also uses restasis eye drops to dry to easy the dry eye by reducing inflammation. I also use dry mouth mouthwash and mouth spray.
Primary Immunodeficiency
Primary immunodeficiency is an umbrella term for over 80 conditions that cause the immune system to be weak and putting a person at higher risk for infections as well as autoimmune diseases. Most primary immunodeficiencies are genetic but some are not. I had genetic testing done and that yielded some results but we are still trying to determine which specific PI I have. Primary immunodeficiency is treated with IVIg and vaccinations.
Autoimmune Glomerulonephritis
Autoimmune glomerulonephritis is an umbrella term for conditions in which the body attacks the glomerulus, a cluster of nerve endings, spores, or small blood vessels, in particular a cluster of capillaries around the end of a kidney tubule, where waste products are filtered from the blood. We had a working diagnosis of Berger's disease but now we are not sure if that is truly what I have so we are trying to figure this out as well.
Aggressive Systemic Mastocytosis
Aggressive systemic mastocytosis is a complex and severe form of systemic mastocytosis. Mastocytosis causes the bone marrow to produce too many mast cells so they accumulate in organs, mostly the intestines. Mast cells play a role in allergic reactions but can also put someone at higher risk for certain autoimmune diseases such as multiple sclerosis, rheumatoid arthritis, vasculitis, inflammatory bowel disease (Crohn's & colitis), and glomerulonephritis. My mastocytosis causes chronic urticaria and anaphylaxis. It also creates a perfect storm with my Crohn's as mast cell proliferation promotes inflammation and the inflammation from Crohn's causes mast cell degranulation.